What's the Deal with Dialysis?
A conversation about the kidneys and what happens when they fail.
What's the Deal with Dialysis?
Against All Odds A Story of Gangs, Dialysis, and Lifesaving Love
What does it take to transform a life marked by gang violence and kidney failure into one of hope and second chances? Our guest Al Fila lays bare his heart in a raw, unrestrained narrative that charts his path from a troubled youth to a man graced with not just one, but two lifesaving kidney transplants. He shares the perils of his earlier days, the profound impact of incarceration, and the saving grace of dialysis—the unsung hero that kept him alive against all odds. A conversation with Maurice Carlile, a dialysis technician, further illuminates the critical role that medical expertise and compassion play in this fight for life.
Through love's remarkable power, Al's journey also encompasses the extraordinary bond with his wife, a beacon of hope who stepped forward as his kidney donor, epitomizing love's ultimate sacrifice. The narrative doesn't shy away from the medical complexities either; it plunges into the harrowing experiences of battling high antibody levels and navigating organ rejection—challenges that test the human spirit as much as the body. Stepping into the light of medical advancements and emotional endurance, this episode is not merely a listening experience—it's a testament to the resilience nestled within the human soul, and a reminder of the miracles that dedication and science can achieve together.
A conversation about the kidneys and what happens when they fail.
What's up, beautiful people, I'm Aaron McLaughlin, here for another edition of what's the Deal with Dialysis, where we talk about issues around kidney dialysis and just the kidney dialysis industry.
Speaker 1:And today we're talking once again Maurice Carlile, who is our technician and the creator of this whole concept, and if you've been on here before, you know that Maurice is in Ohio and he has been a technician for years and found that there were some things in the system that he wasn't really, you know, really vibing on. So he wanted to, you know, share education, share issues, and so we're starting to have conversations. And today we're bringing back somebody that we talked to years ago, mr Al Fila, and he's got a story, and so since the last time I talked to you, al, there's been a lot going on. So, just to let the people know who you are, first of all, give us like kind of a kind of a brief history of who you are, where you're from, and then, like just the first time, like when I met you, you had gotten a transplant, but you had told me about how you came to find out that you had kidney failure, and so give us that part and then we'll continue from there.
Speaker 2:So the way everything started, for me it's kind of like a. It's like a street fairytale meets Jesus Christ in the prison system. Slash three kidney transplants later. Here we are right, but it started out and those little rambushes in the streets.
Speaker 2:I grew up in a place called the Inland Empire, like the Inland region of California, and you know I caught myself gang banging and drug dealing and the things that a lot of us kids do in poverty when we try to, you know, make a way for ourselves with no roadmap or no instructions or no father figure and things of that nature, right? So I ended up getting started in my back and after I started getting real sick, like always vomiting, having headaches, high temperatures and figures, and at that time I was 17 years old. So when I went to the doctor, the doctor told me I needed to go on dialysis. So I never really went back to the doctor because I assumed in my young mind that dialysis was like yeah, so I was like I got to go back to the doctor, get this prescription I needed, you know, do it, but when I get time right. So subsequently, like I said, I wasn't having all of these issues, you know, with you know, being a good guy at heart but doing, you know, street things and being young, you know what off the father figure. I found myself in prison at 18. So when I went to prison is when I really kind of knew what dialysis was and got an understanding of it. That's why I started dialysis side of genome prison in 1990, I told so once I started dialysis.
Speaker 2:My first round with it was more or less like it was like a whole change of lifestyle. You know, it was almost like I didn't want to believe it. I looked at it from like a vanity point of view, like like I thought I was a pretty young dude, you know. And it's like now y'all, starting with my arms, you put in these, these tubes in my arm, now got all these tracks on my arm, you know, and I didn't even have to answer as well was going on and then my friends was asking me like what's wrong with your arms? You got all this, you know different things in your chest. Like you know, it was more like a confusing type of situation because it was totally abnormal from what was my normal and so just to move a little further, so I ended up doing like four years in prison on dollars and as time progressed I started to look at dialysis like a wind, because after the shock kind of wore off, of like having these needles in my arm and needing the machine stay alive and kind of feeling that anxiety every night kind of society and I was thinking that it is a win because it got me out of prison every other day.
Speaker 2:Back in the 90s they would take us to dollars units because they didn't have them inside the prison at that point and so I started meeting people. You know a lot of good people. You know like Marie's, like yourself, and they would just tell me like, do this, this is what you could do for your diet. You know, try to keep yourself down in the pool, won't be so hard and you won't feel so fatigued, you know. And I just started learning. You know that was like the start of my kind of accepting and learning more about it and that was kind of like the beginning of my dollars journey right there in the next year.
Speaker 1:Great that's, I mean number one. It's an amazing story. First of all, you got shot and that you were in jail and you know, just not having the information and that's something that we come up against all the time as we have these conversations and part of the drive here is because you had no idea what was going on with you, like you had nobody telling you for a while, it seems like right, and nobody around me what that was right, and so you know that's what we're trying to do, is educate. So tell me about you know you're in jail, you're going through dialysis, tell me about the journey to your first kidney transplant.
Speaker 2:Okay, so what happened? I got out of jail June 25, 1995, it was Mac dab. In the summer I had been in jail since 1990, october 14. And this is where the God part comes in. And I was just praying because I was just like, at this point I was more educated. You know, having working out in prison, I had got used to being on dialysis and now it was actually looking forward to the transplant because I had did, you know, some, some research and I started finding out about the little procurement process and all the little entities that were involved. You know, as far as trying to get a transplant, how to get on the waiting list, and while you're in prison you can't get on the waiting list. So I felt like not only was I getting released from prison, I wasn't getting released to the opportunity of actually being able to get on this list that I kept hearing about, right? So I got on the list and it didn't seem like nothing was really happening in.
Speaker 2:The year went by, another year went by and I just kept praying. I just kept praying. At this time I was going to church like really heavy, going to Bible studies and Wednesday night churches. On Sunday, then it touched with my brothers and I was like we can just stay faithful, you know, to the work and I felt like the spirit kept telling me you're going to get a kidney, like against all the odds. You know, you hear about the seven year waiting list. You hear about people dying on dialysis. You hear about, you know, people becoming diabetic or, vice versa, diabetes becoming, you know, dialysis patients. Just all this stuff coming through the filter my young mind I was 25 at the time but this is what happened.
Speaker 2:My wife was a dialysis technician. She was a dialysis technician. She just stopped, maybe seven years ago, and she started doing foster care. But she was a dialysis technician for like 25 years and she was working at a hospital in San Bernardino, california, called St Bernardino Medical Center. And it just so happened. This is how God lined everything up. It just so happened that it was a transplant. I don't know what they call it at the time, if it was like a transplant team. I know it was definitely a dialysis center, but they had her actually go upstairs to their transplant department. That's what it was same brandings.
Speaker 2:She just gave blood one day and she didn't even tell me she was just like you know. They told me that I possibly could be a donor. But it's all about you know the blood and antigens and how things match up and blood size etc. So she just caught me on the phone one day and she said hey, you won't believe this. I said what she said on my lunch break, you know. A couple weeks back, whatever, I went upstairs and they tested me out and they said I met you, I can give you a kidney. I'm like no way. She's like yeah, they said I can give you a kidney. So to speed up, two more years now we in 1998. And my wife she gave me my first kidney transplant. Wow, yeah, yeah, my wife gave me my first. And we still together today. We've been together 34 years.
Speaker 3:Man, that's awesome man.
Speaker 1:You don't look like it's three years old dude, I just turned 50.
Speaker 2:I just turned 50 last month, March 4th.
Speaker 3:Congratulations man, Thank you my brother.
Speaker 2:Thank you, my brother.
Speaker 1:So really quickly, like just speak to. Like that process I mean you're used to, you know people that are in Dallas is for a long time like how rare, is that what he's talking about?
Speaker 3:Yeah, very rare. I mean they are getting better at matching people, but I mean the process is just strung out like over years. Man, it's a blessing that you have somebody get tested, because basically most of the time they just wait, just wait to see if somebody matches with you. A lot of times people are asking family members and stuff now, and that's a common thing now. A lot of times they don't match up or there's other things in the way.
Speaker 1:Man. So, all right, you get one. Right. Most people wait a long time to get one yeah, eight years. So how did it come Like first of all, how did like what happened that made you need to get a second one? And then how did? What was that process like?
Speaker 2:Well, I found out that what happened during the course of me getting shot, subsequently going to jail, all kind of simultaneously, within like six, seven months, that I had something called polycystic kidney disease and it's just a slow deterioration of your kidneys that my dad I didn't mention. My dad was on kidney dialysis when he passed away. So they said usually a skips a generation, but it didn't. It went from him and I had it right. So I don't know if me getting shot sped up the process, because I did have acute failure because of getting shot, but they never, ever kicked back in. But they, they you know how they do biopsies and tissues research they said it was because of the polycystic kidney disease. So that was kind of like something that probably was going to happen to me later down the line. But I think that my incident getting shot kind of sped it up and that's kind of how I ended up on the dialysis machine and then I got the transplant from my wife in 1998. That was my very first transplant that I had and that transplant lasted me all the way. I remember I went back on dialysis 2007, march 12th, because I remember they wanted to put me on my birthday week and they said no, I will give you seven more days. So I went on that next. I think it was a Monday like March 12th, and that was I was back on dialysis again because that, that, that kidney. It only lasted like eight years, nine years, and they just kept looking at the labs and they were like your crack is getting high and be you in and all this stuff is out of, out of whack. We see you having, you know, seven, eight more months with this kid, you know. And back then this was so early in dialysis that they weren't doing a lot of things Like they do now, like I'm right now. I'm on a bunch of steroids and I'm on some medicine called the lightest set, some fusion sauce called plasma Bob, they didn't have all of these things to try to say kidneys. It was almost like look at the labs, labs say that the kidneys failing. We give you eight months, right? So that was my first situation Um, getting the kidney, the kidney failing, in 2007. Went back on dialysis for the second time March 12, 2007. And I stayed on dialysis all the way until October 2016. That's when I got my second kidney transplant and UC Irvine.
Speaker 2:Now this is where the story gets interest. Usually, when you have a kidney transplant, you have and you develop high antibodies. It's like a country that used to have in wars, that second, that third war, they're more war ready. So they kind of standing on the front line, their soldiers right, and that's how your antibodies do. Once your body has been invaded by transplant, like any kind of organ transplant, you have these high antibodies in your body. That's just going to reject anything, putting your body at this point at like a very progressive level.
Speaker 2:So in 2016 in October, when I went to a university Irvine Medical Center to get my second transplant, they've seen that the antibodies were high but the transplant had came like so fast. I had just started going to this nephrologist. They were working me up. They were just putting me back on the transplant list because at this time I didn't have a donor. I didn't have another donor, so I imagined they thought like I thought that it would be some time, but the kidney came up like nine months. So they called me and we were kind of in a predicament and the predicament was, when you have these anti-bodies, you should go through a process of desensitization, and the way they do that is they do it through something called plasma pharesis.
Speaker 2:They use this thing called IVIG intravenous immunogoblins, which are basically like immunosuppressants to suppress your antibodies, and plasma pharesis is almost like they take some of your plasma out and they take the antibodies out and they give it back to you like dialysis. But it's called plasma pharesis and basically what they're doing when they transplant you they wanna have your antibodies at an all-time low. Being that the kidney was there, it was ready and they said listen, we got a kidney match for you. It just came up. By the grace of God. Do you wanna transplant? We don't have time to do the desensitization because that takes like three to four weeks or even longer depending on how your antibodies react. So we all agreed let's do the transplant. So we subsequently did the transplant. The transplant worked for maybe four months and it rejected All right, we'll see you next time.